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Help Us Learn More: Survey on Dangerous Condition in PWS

Survey: Vascular Blood Clots, Deep Vein Thrombosis (DVT) and/or Thrombosis in Prader-Willi Syndrome Our recent review of causes of death at PWSA (USA) has increased our awareness of the risk of death due to blood clots to the lungs/ pulmonary embolism’s(PE’s) in Prader-Willi syndrome. Additionally, there have been two PE sudden deaths during a recent […]

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PWSA (USA) Supports Two New Important Studies!

Calling all fathers! A study on the role of PWS male caregivers has been approved by PWSA (USA). Dr. Leon Caldwell has been awarded a grant to do a study on the needs and issues of PWS fathers and other male caregivers. The purpose of this study is to learn about the coping and parenting […]

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New Oxytocin Phase 2 Study Match Announced!

Thank you to our PWS community for responding to the challenge match announced by Prader-Willi California Foundation (PWCF). Donors responded by the October 30th deadline to activate the $10,000 match and the release of an additional $10,000 match to be provided at a later date by PWCF. We have raised $385,000 for this study that […]

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The Zafgen Clinical Trial Partial Hold

I would like to assure our PWS members that both PWSA (USA) and FPWR have been involved with discussions with Zafgen and the FDA regarding safety issues on the Zafgen clinical trial. A “partial hold” means that the study can continue with additional safety monitoring. We are in full support of the additional safety monitoring […]

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Prader-Willi California Foundation to match gifts for Oxytocin study!

$20,000 In 20 Days for Oxytocin Research! Thanks to the generosity of the Prader-Willi California Foundation (PWCF) a $10,000 matching grant has been announced for the Oxytocin phase 2 study, led by Dr. Jennifer Miller. PWCF will donate $10,000 if PWSA (USA) can raise $10,000 over the next 20 days. So for the next twenty days we have […]

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Oxytocin Study Research Update

We want to thank all of the generous donors for their support of the oxytocin Phase 2 clinical trial sponsored by PWSA (USA) and led by Dr. Jennifer Miller and Dr. Dan Driscoll. Both physicians are well respected leaders in the field of research for Prader-Willi syndrome.  For this clinical trial, $290,000 has been raised […]

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Noninvasive Prenatal Screening – Testing Now Available For PWS

Janalee Heinemann, PWSA (USA) Coordinator of Research and International Affairs Noninvasive prenatal screening (NIPS) – also called noninvasive prenatal testing (NIPT) or cell–free DNA testing – is now available for Prader-Willi syndrome (PWS). Testing can be done any time after 9-10 weeks gestation because DNA from the fetus circulates in maternal blood. The testing is […]

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PWSA (USA) Joseph McErlane Research Grant

  PWSA (USA) is sponsoring a grant that will bring therapy to the home! PWSA (USA) Joseph McErlane Research Grant Project Title: Evaluating the Feasibility of a Telehealth Intervention of Early Social Cognitive Processes in Children with Prader-Willi syndrome Principal Investigator: Anastasia Dimitropoulos, Associate Professor of Psychology, Ph.D. Case Western Reserve University, Cleveland, OH   […]

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